Category: dyspraxia

  • International Women’s Day includes my “apraxic, IC kid”

    International Women’s Day includes my “apraxic, IC kid”

    I practice person-first language.  I make sure I use it in every setting.  If you’re not familiar with person first language, it’s the idea that you put a person *before* their disability.  The idea is that when we put the disability first, we define a person by their disability.  However, no person is defined by their disability.  A person is just…..a person first.

    So, instead of saying that bipolar guy, you would say, “that guy who has bipolar.”

    Instead of saying my apraxic daughter, I would say, “my daughter who has apraxia.”

    Instead of saying that “stutterer,” you would say, that child/man/woman who stutters.”

    There is a lot of debate about this honestly.  Some people think it’s political correctness gone too far.

    I have never had much of an opinion, except for the fact I made sure to use person first language so as not to offend anyone personally or professionally, and I never minded if someone said my apraxic daughter.  It’s all semantics.  Whatev.

    Well, that is until today.

    I work a day and a half in the same school as my daughter.  She is in a program called ILC (Integrated Learning Center).  In most districts, this program would be a Center Program, and it is, kind of.  In this district, there is more a focus on inclusion, but with para (classroom aid) support.  To get an aid though, you need to be in the ILC program.

    Ashlynn’s ILC teacher is AMAZING.  I mean, my daughter is on grade level in math and she is making huge gains in reading.  I can’t really even believe she can read a sight word book at times.  It took 3 YEARS of me helping her just be able to name the letters in her NAME!  Word finding impacts her BIG time.  Even if she could read I thought, she would NEVER be able to show it until years down the line.

    Wrong.  She’s coming home with new books every day she is “reading.”  It’s incredible.  I mean seriously incredible people.  She couldn’t talk three years ago.

    Anyway, other kids who need help reading get pulled out too, but they are pulled into a “resource room” that has no specific name.  They just get “reading support.” Ashlynn gets reading support too, but her programming has a name, and that name in this district is ILC.

    I’m part of many, many, many IEP meetings.  Parents ALWAYS worry about putting their kid in the “special classroom.”  Usually, it’s based off of their own experiences growing up, knowing and remembering the kids who were in the “special classrooms.”  They don’t want their child to be labeled “special” “different” or made fun of.  We assure them things have changed.  It’s not like that anymore.  And it’s true.  Seriously!  I do think things have changed drastically since even when I was in school.

    I have to digress really quick, but it reminds me of my colleague I worked with many years ago named Mr. G.  He was a SPED teacher from Brooklynn and he was funny, engaging, and the kids absolutely LOVED him.  Apparently he was in SPED when he was younger.  You know, the “special classroom.”  He said the buildings and programming were so archaic in Brooklynn when he was a child at the time, that he was literally separated from his general ed peers into a classroom in the basement of the school, and the only window had bars on it. He was also a bit of jokester, so when he told the story it was funny.  However, if you think about it, there is nothing funny in what he said.  How awful.  A man who was able to get a master’s degree in teaching, was once banished to a basement of a school with bars on the window.  How on Earth did he make it out on the other side?

    Anyway, yes, times have DEFINITELY changed since then thank goodness.

    Where is this story going, you might be asking.

    Well here it is.  I never worried about Ashlynn being my “apraxic daughter” or in “ILC” until today. I was working at her school with a child who has been identified as GT (gifted/talented) and a double X’r (twice exceptional).  The twice exceptional refers to the fact he is gifted, but still needs support from SPED (me…speech).

    We were walking in the hallway and I looked out the window toward the playground where I knew Ashlynn was playing.  I said I just wanted a quick peek at my daughter.

    He asked me, “Is her name Ashlynn?”

    “Yep,” I quipped proudly.  “Wait, how do you know?” I inquired.

    “Oh, she’s an IC kid,” he said matter-of-factly.

    My face fell.

    “How do you know she’s an “IC kid?” I said, and my entire body literally cringed.

    “Well, she goes to that room.”

    I studied him.  Innocent.  Blunt.

    I wanted to ask him what an “IC kid” was, but I just couldn’t bring myself to ask.  I was too scared of the response. Maybe it would have been innocent too.  Why did I automatically think it would be negative?

    I don’t know.  All I did know, is I do NOT, definitely, never, ever, want anyone EVER to label MY daughter as an “IC kid.”

    She’s a kid.  She’s a kid who goes to ILC because she has apraxia, and that’s it.  There’s nothing else to see here.

    I don’t blame this kid.  He’s an innocent KID for Pete’s sake.  I still felt bummed though.

    I came home tonight to this:

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    She lost her first tooth, or should I say “teeth.”  Both bottom front teeth came out tonight.  She was scared, then happy, then nervous for the “tooth fairy.”  She told me, “Tell the tooth fairy to not scare me, okay mommy?”  She also said, “maybe I will get five dollars.”  My husband who was in the room next door spit out his drink and said, “where did she get 5 dollars??”

    I smiled.  I don’t know.  She came up with it all on her own though.

    I kissed her goodnight, and I vowed to make it my mission everyone see her for HER.  She’s not an apraxic kid.  She’s not that special kid.  She’s not that IC kid.

    Her name is Ashlynn.  She was born to move mountains, to kick ass, or to be whoever the hell she wants to be. Today is International Women’s Day, and I love this quote:

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    Ashlynn not only handles all the shit that has been handed to her, but she handles it with grace and a smile.  I know that will only continue to serve her well.

    So today, I have officially sealed my opinion, that person first language IS important because Ashlynn is Ashlynn above any, and EVERYTHING else.

  • Finding all the wrong words or no words at all.

    Finding all the wrong words or no words at all.

    I think one thing, well actually I KNOW one thing I never knew about CAS before Ashlynn, was the significant difficulty kids with CAS tend to have with word finding.

    Ashlynn and all of my clients struggle with this to varying degrees.  Sometimes, Ashlynn’s seem innocent.  She’ll call me grandma after she’s been with her grandma all day.  She’ll say “today” when she really meant “tomorrow,” or say “tomorrow” when she really meant “today.”

    Sometimes though, despite being able to speak, “finding her voice” as we like to say, that doesn’t always mean she can find her words.  This is especially true when she is sick, tired, or both.

    I received a text from a friend a couple weeks ago.  Her son is a year older than Ashlynn, still in speech, but talks non-stop now.

    “I debated calling in today and letting G stay home.  He was just not himself this morning.  He said, ‘No school. I can’t.’  He walked down the hallway with drooping shoulders.”

    I asked her why.  She didn’t know.  That’s all he said.  “No school.  I can’t.”

    My response?

    “Stupid apraxia.  Even when they can talk, they can’t verbalize everything they are thinking/feeling.”

    A few hours later she texted me that G was sent home from school because he was sick.

    My daughter used to become overheated in her carseat.  It would cause her to throw up, but she would only tell me, “my neck hurts.”  I became really good at diving to a shoulder when Ashylnn’s “neck hurt!”

    Today I had the day off with both of my kids.  It was great!  We played, relaxed, and even took a nap.  Aren’t they cute?

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    Ashlynn NEVER takes naps anymore, so I should have known something was up then.  She went to her private swim lesson tonight, and then we all went out to dinner.  I spent most of the dinner in the bathroom with her.  She kept thinking she had to go “potty.”  We walked around, we jumped, we danced, nothing.  She started saying she was tired.  She NEVER says this. I asked her if she felt sick.  She said no.

    We drove home, gave her a bath, and she went straight to bed.  I rubbed her back and asked her again if she felt sick. Did she feel like she was going to throw up?  Did her tummy hurt?  She just shook her head no.

    I went out to the living room, and not 5 minutes later I hear coughing and she is throwing up.

    Sigh.

    Not that it matters I guess whether she had told me she felt sick or not.  It’s not like the outcome would have changed; but it is a glaring reminder of how speaking intelligibly and finding her voice, did not fix everything like I thought it would.  She will still struggle to find her words.

    I remember listening to a Ronda Rousey interview, and she was saying that when she received a bronze medal in the Olympics she was a young girl in her teens and people wanted to interview her.  She would beg her mom not to make her do it.  Her mom made her do it anyway, but her older sister would sit behind her chair, and when Ronda couldn’t find her words, her sister whispered some to her.  Ronda doesn’t do interviews anymore with her sister behind a chair, and that gives me hope.

    For now though, I’ll file away this event in case I need it later.  Just like I did when Ashlynn’s neck hurt.  I always say a mother is an expert on her child, and this is why.  Only I know these signs.  Only I was there through all of these situations and experiences.  ALL of them.

    Next time, I will know she needs to throw up and I’ll be prepared.

    I’ll give her the words when she can’t, or is just too tired to find them herself.  I will know because I have always listened and I will always listen to way than her words, and I always will.

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  • SLPMommyofApraxia Top Posts of 2015

    SLPMommyofApraxia Top Posts of 2015

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    Graphics by MyCuteGraphics

    This year was definitely a big year for me and for apraxia awareness!  I coordinated the Walk for Apraxia in Denver, I was honored to be published in the ASHA blog and on The Mighty twice; and of course as you all know, my story on Ronda Rousey having apraxia went viral and was featured in national publications and on Good Morning America! This lead to our popular facebook group Ronda Rousey: Knock out Apraxia, and numerous posts featuring our apraxia fighters attached to the hashtag #knockoutapraxia.  It has been quite a year!

    Thank you to all who follow along, everyone who helps raise awareness, and all who have reached out via email or phone and connected to me!

    Here are my most viewed posts of 2015!

    1.) Her Fight our Fight: The day we met Ronda Rousey. Read here

    2.) Strategies to promote speech and language in the pre-verbal, or minimally verbal child with apraxia.  Read here

    3.) What is Childhood Apraxia of Speech? Read here

    4.) Repetitive books that are great for speech and language. Read here

    5.) Why nature weighs more heavily than nurture. Read here

    6.) Prognosis is not just a funny word, there is nothing funny about it. Read here

    7.) Global Apraxia, you brought your A-Game, but my daughter’s game is better.  Read here

    8.) Interview with Reagan, a 17 year old with CAS. Read here

    9.) Feed the Snowman Articulation Game for high repetitions. Read here

    10.) Interview with Sharon Gretz, the Executive Director of CASANA (apraxia-kids.org) about what you should be seeing in therapy.  Read here

    In case you missed it

    These are some of my personal favorites and topics since I started blogging throughout the years

    1.) IEP on the other side of the table chronicled Ashynn’s first IEP meeting and how I experienced first hand how difficult they are on a parent.  Read here

    2.) Ashlynn Play Boats with Daddy details persistent language and dyspraxic issues, but also progress and success.  Read here

    3.) DTTC: Evidence based treatment in CAS is an interview with national expert Ruth Stockel from the Mayo Clinic on treatment using this method.  Read here

    4.) Wait…is she the….R word? Read here

    5.) Experience is the Key Architect of the Brain in CAS. Read here

    6.) If We Don’t Say We’re Scared, Does it Mean We Don’t Have Fears? Read here

    7.) Did I Cause her apraxia? Read here

    8.) Lessons of a tricycle. Read here

    9.) ABC song and Happy Birthday Jace.  Read here

    10.) What if We Don’t Prove Them Wrong? Read here

     

    Happy New Year Everyone!

  • Why we’ll never stop working

    Why we’ll never stop working

    I’ve been down lately.  Really, really down.  It pretty much started at Ashlynn’s re-evaluation meeting and went downhill from there.  For all the work she’s done, for how far she has come, for what she knows in the face of so many challenges,  it was like a slap in the face.

    It’s really not anyone’s fault.  It’s just the way it is.  I’m dealing with mixed expressive/receptive language issues now.  I knew this, I did….it’s just seeing those damn numbers.  1st percentile, .5th percentile.  Phew.  Deep breath

    There were also awesome numbers.  Articulation is in the average range.  The AVERAGE range!  That’s phenomenal.  Ashlynn is intelligible to perfect strangers in and out of context.  For someone with apraxia of speech, she beat it in 2 years with a TON of therapy, but she overcame it.

    Now we’re faced with new deficits.  Word finding, expressive language, grammar, syntax, receptive language, memory, attention, writing.

    It was overwhelming.  My husband had tears, and he’s the one who always finds the positives and the “what she can do’s.”

    Even her receptive vocabulary test came back just under the average range.  Receptive vocabulary tests have been shown to correlate with IQ tests (even though I didn’t give her an IQ test), and even though I don’t think the test was totally valid since I’m sure her attention played a factor…..

    It still made me pause.  For once I started thinking, maybe we don’t have this.  Maybe I am dealing with limitations.  Maybe I am in denial.  Maybe I’m not seeing things because I don’t want to see them.

    I would read stories and updates on other blogs and get jealous someone’s child ONLY had apraxia of speech.  CAS is no joke either, but if Ashlynn only had CAS then she would almost be over speech forever!  Sigh.  You know you’re down when you’re jealous of other kids’ disabilities.  That is wrong on so many levels.

    I looked everywhere trying to get my positivity back.  I talked to family, to friends going through this journey too, co-workers…nothing helped.  I poured over pinterest looking for inspirational memes and quotes that were going to change my negativity and squash my doubts.  I found nothing.

    I scoured the internet looking for success stories for global apraxia.  One I found was on disability now but at least happy she had made it through childhood.  That wasn’t exactly lifting my spirits.

    At the same time, I finally read a new research article on Apraxia that’s been in my pile.  The article describes kids with motor planning deficits (kids with apraxia) rely heavily on auditory feedback which was proven when they demonstrated diminished speech articulation in the presence of noise.  Gee, I thought. That’s great these kids found a compensatory strategy to make up for their motor planning deficit, but what happens when you have sensory processing disorder and possibly some receptive language issues that makes that feedback unreliable.  UGH

    But then I found it.  My inspiration was sitting right under my nose.

    I know this guy who has bipolar disorder.  When I met him he was kind of a hot mess.  He hadn’t gone to college, was partying, and constantly getting fired from his jobs.  Of course, having bipolar disorder is very difficult.  There are daily struggles in his mind I will never know.  The statistics for someone with bipolar disorder are less than impressive: 90% of marriages end in divorce when one person is Bipolar.  Less than 50% of people with bipolar take their meds, and 1 in 5 commit suicide.  Many live on disability.  Many are homeless.  This guy though, he’s been married for 10 years with no sign of stopping.  He’s loyal, faithful, hardworking, finished college AFTER his diagnosis, and stays on his medication.  Who is he?

    He’s my husband.  He’s Ashlynn’s dad.  Everything he shouldn’t be doing he’s doing.  Everything he shouldn’t be, he is.  My husband, Ashlynn’s dad, defies statistics.

    Then I started thinking, I know this other guy.  He was raised under an extremely physically abusive, alcoholic father.  His parents ultimately divorced.  He was forced to go to war and and live in actual nightmares.  What are the stats on a guy like this?  Well, since he’s the product of divorce, he’s 40% more likely to end up divorced himself.  He’s four times more likely to be an alcoholic.  As a vet, he faces a higher possibility of homelessness.  What did the future hold for this guy?

    Well, he’s my dad, father of three. Married for 45 years and happily retired.  He’s healthy and has a drink maybe once a year.  My dad, Ashlynn’s grandfather, defies statistics.

    And that’s when I started to realize.  Ashlynn comes from a long line of statistic breakers.  It’s in her blood.

    I thought of me.  Had I defied statistics?  Well, neither of my parents went to college, so it would be less likely I would receive a college degree or much less an advanced degree….yet here I am. It was highly unlikely I would have ended up at Duquesne University for an elite group of SLP’s, yet there was I was last summer.  Maybe I do defy statistics.

    My dad’s nephew years ago was on the wrong track.  He was in jail, and he didn’t know how to make a life for himself after he got out.  He was lost.  He asked my dad for advice and my dad said “keep working.  All I know is to work.”  Years later that same nephew had kept a job and was raising adopted children.  He was not in jail and will never go back.  He told my dad he always remembered his words to just keep working.

    So there it was!  Right under my nose.  We are statistic breakers.  We are hard workers, and Ashlynn is no exception. She always wants to work, do homework, practice writing, ball skills, pedaling, speech, read..you name it.  She attacks it, and I realized, I may not have success stories for her EXACT same situation, but I do have success stories for many other hard or seemingly impossible situations and she will be one too…..if we just keep our head down and

    working.

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  • Global apraxia, you brought your “A game,” but my daughter’s game is better.

    Global apraxia, you brought your “A game,” but my daughter’s game is better.

    My friend introduced me to an AWESOME website call “The Mighty.”  During the month of March, they challenged readers to write an open letter to a disability that a loved one faces.  I have no idea if I’ll get accepted, but hey, at least I have a blog.  For as much writing I do about apraxia, it was definitely high time to talk to apraxia myself.

    Hello apraxia.  Hello global apraxia.  It’s hard to believe we’ve never talked, especialaughlly since I’ve certainly done my fair share of talking about you.  When I gazed into my new baby girl’s eyes, and laughed along happily to her hearty giggles, I had no idea then that you were there, lurking in the shadows.

    The day I discovered you were behind the delayed motor milestones and the lack of speech I cried heavy tears and felt a weight I don’t think I quite have shaken yet.  You certainly brought your “A game” global apraxia.  I hate to admit I have felt defeated by you before.  However, you never managed to crush a small little girl’s determination, attitude, resilience and perseverence.  We are told you will never go away.  Anything requiring a motor plan will always take “more repetition than most.”  Oh how many times have we heard that?  I hated you once.  I hated watching my baby girl struggle to: speak, to jump, to ride her bike, to drink without choking. In fact I still hate you as I continue to see her struggle to: dress herself, feed herself, and write her name.  In fact, I don’t think I’ll ever quite forgive you when I think about the day she almost drowned.

    Mostly though, I feel sorry for you.  You have no more power here in this house, because my little girl has shown she can beat you time and time again.  She is a hero who wins daily, weekly, and monthly battles, and that winning is something you will never know.  Bet you didn’t expect something so strong to come out of something so small did you?   Well, we actually have that in common.  My daughter’s bramightyvery took me by surprise too.

    You will never know winning here, but because of your stubborness, we only grow stronger and more confident, knowing that any obstacle in our way can be defeated with faith, tenacity, and an unrelenting positive attitude.

     

     

  • Ashlynn play boats with daddy.

    Ashlynn play boats with daddy.

    This past Fourth of July weekend we went on our annual trip to Glendo State Park in Wyoming. My husband and I have been going since before we had kids. Without getting into all the details, once you go to Glendo for the Fourth, you always go back if you can! Last year we couldn’t go because I was having my son so we were very excited.

    When we went to the beach, Ashlynn saw my husband pull up on the jetski. She looked at her grandpa and me and announced, “Ashlynn play boats with Daddy?” I teared up immediately. I know I sound like such a sap, but when you are the parent of someone with apraxia and they say things and put novel words together in context, it is just the best feeling! I asked her if she wanted to ride the jetski with daddy, to which she enthusiastically replied “yes.” I of course then scripted the appropriate  way to ask the question and had her repeat, I want to ride the jetski with daddy.

    We still have a ways to go. We’ve been working on her using the first person “I” since before school was out. It’s just such a testament to how much repetition a child with apraxia needs, because I correct her and make her repeat her phrases and sentences using “I” every time she refers to herself as Ashlynn. We were so intent on getting her to learn her name that now it’s hard to get her to use something else.  However, I do know that she will get that too, and that’s a comforting feeling.

    Two years ago we took her to Glendo when she was 21 months old. At that time she had just learned to start walking really well and she only had a handful of word approximations. Unfortunately, anything that wasn’t a flat surface was difficult to walk on, so we still had to help her walk everywhere. She only had a handful of word approximations, and her favorite thing to say was “a dah.” and “hi.”  I’ve learned from my parent support group that most kids with apraxia have a go to sound that they use for everything, and “a dah” was Ashlynn’s.

    Fast forward though two years (and a lot of therapy and extracurricular activities to work on motor skills) and she was running on the beach and bending down on the sand. She is still unsteady in the waves and can’t be trusted around the fire pit for fear she will lose her balance and fall, but that will be a progress report for another time. For now, we celebrate that in two short years, a dah was replaced with a complex sentence asking to play boats with daddy, and now she fearlessly got up on the jetski.

    I look forward to coming years when she will be navigating around the campsite without fear of falling, swimming in the water, and maybe waterskiing or jetskiing on her own.  Also, I excitedly anticipate her talking our ear off around the campfire.